In a comment on Forwards, Backwards, Who Cares?, Sherry noted that she recently started to wear progressive glasses. I’ve been wearing them for more than a decade. So, when I had my first eye exam after my vertigo, my eye doctor wondered if she should take them away.
“Why would you do that?” I asked.
“Because you might be dizzy,” she said.
“I’m dizzy all the time. I’m not dizzy when I see well. I’m dizzy because I have no ocular vestibular reflex. I’m broken. If you give me a good prescription for my glasses, I will be less dizzy. I’ve already adapted to my glasses. It’s the rest of my brain that hasn’t adapted. Right?”
Phew! Let’s keep the number of changes down, please.
My regular physical therapists and my trainer are the only ones who challenge me on a regular basis. Oh, and my regular doctor. They treat me as if I’m a thinking, responsible, adult human being, who can make her own decisions. I might need help from them. I will ask. What a novel idea.
My other doctors and health care providers? They have trouble with me. I’m such an unusual case—I don’t have a diagnosis, so I’m not categorized—they have trouble. Do they sympathize (feel pity and sorry) for me? I think they do. That clouds their judgement.
I prefer that they empathize with me. That they feel understanding with me. That they put themselves into my situation. Now, this is difficult. Being dizzy all the time and being deaf in one ear is a total pain the tush and impossible to understand on the intellectual level. But, if they take the time to listen to me, I am sufficiently articulate to explain what’s going on.
So, when I explain to my eye doctor, “I can’t see out of these glasses because my eyes have changed,” she can (and should ask), “Is your vertigo or medication causing any vision changes?” I can say, “Oh no, it’s the standard JR-every-two-year-vision-changes.” And, that’s that.
When I have other changes and need to see the otoneurologist, I explain those changes. Those are much more serious and require substantive discussion.
Vertigo is not deadly. However, I fall down a lot. I bump into things. I seem to require a village of doctors, more specialists, than any relatively healthy human should require. This is a problem.
I want to treat these docs with respect. But, when they ignore my brain, both the sentient part, and the dizzy part, I have a difficult time respecting them. They see my cane, and decide I am a little old lady who cannot make decisions for herself. I have to reset their mental models.
I have options for this.
I try to build rapport first. I smile, and shake hands firmly. I remind them I am self-employed, working full time. I remind them I travel a lot. I remind them I am a published author. I ask when they most recently published. (I look for commonalities.)
When that fails, I tell them I am not old. I am a young, vibrant woman who is not willing to die yet. I happen to have a condition that is not consistent with the activities I would like to perform. Their job is to help me regain the life I would like to have. Would they like to partner with me or do I need to find another partner?
That usually shakes them up. Very few patients confront doctors.
But I am more capable than my doctors think I am. I have a bigger mouth than they expect. I have to be my own advocate. No one else will be, not while I am conscious.
The partnership discussion surprises them. So does the notebook. When they realize I want the proper terms for things, when they realize I can read MRIs, when they realize I am smart enough (not to be a doc) to have a discussion about my condition and what to do next—to be a partner in my health care—the relationship changes.
Some doctors like this. Some don’t.
I keep the docs who like this. I change the docs who don’t. It’s a challenge.
I have decided that I choose to be an active partner in my health care. I choose to know about my conditions—all of them. I choose to know about my medications and their side effects.
I choose to know about all of my life.
My doctors sometimes have to admit that they don’t know, which makes them vulnerable. I explain that that’s okay. I don’t have a diagnosis. It makes two of us! We can partner and explore together.
We problem solve all the time. Why would we leave the problem solving about our bodies to the supposed experts, when we are the experts on our entire bodies, including our brains?
I need help, lots of it from a wide swath of the medical community. I’m not afraid to ask for help. And, I’m more capable than many of my docs think I am. I might look like a little old lady. But I’m not. I work hard to be strong, physically, mentally, and emotionally. I don’t want pity. I want choices, so I can be a partner in my health care.
I bet you’re more capable than other people think you are, too. This is the growth mindset again. Let’s learn something new today, okay? We can be more capable together.